Has anyone taken the chemo temodar? I am specifically taking it via infusion for 5 days ( but I kno you can also take it orally) with a regular dose of ipi and 10 days of full brain radiation. Apparently temodar can get to the brain so they decided to add it to my treatment because of my situation.
Recently they found leptomeningeal disease in my brain, so basically there is melanoma in the tissue surrounding and protecting my brain and spinal chord.hasnt gotten to the spinal fluid yet which is good, but they did find two small lesions on the bone of my lower lumbar spine :( it's pretty darn serious and I was kicked out of the PD-1 trial I was to start the next week.
So plan B is just trying to be aggressive, hense my agreement to do chemo. I thought I'd be able to skip that stuff, but you can't always get what you want. I've done 4 out on5 infusions so far and haven't noticed many changes, but I kno that side effects often take time to kick in.
i really dontknow what to expect and am not knowledgeable about chemo (temodar especially) and how to take care of myself while on it. My doctors have not been very informative on the subjuct. When they handed me a mask the other day just to walk outside I was very surprised and when I got to see my 2 year old niece 6felt scared to touch or to hold her.
will I lose my hair? When?
i feel ignorant, which I try to avoid when it comes to my health.
Anyone experienced this particular drug and want share some knowledge with me?
Thanks for listening